sometimes frowns // never “downs”

No Matt Man story time for this post. Simply two important bits of information for you all.

I know all of the pictures I share of my brother or William show smiles or sillies. Much of the time these pictures are representative of their overall positivity and joy-filled personalities.

Even though happiness seems to exude from their souls, individuals with Down syndrome are not always happy.

Believe me. They experience a very colorful palette of emotion, just as all of us do. Matt can be annoyed with others, especially when they interfere with his personal time, and he shares his frustration through loud moans and flavorful words. Matt can be fearful, causing him to cry or ask questions a million miles a second. Matt can be overstimulated and flap his arms, shriek, and hold his hands over his ears. Matt can be angry, which can lead him to hit his head and flop on the ground. He can be sad, stubborn, irritated – all the negative feelings. He likes to be alone more than he likes to be with people. He is very opposite my son and would be happy to stay home sitting around than going and doing.

He is very much his own person – more Matthew than Down syndrome. And most of the time, more ‘eh’ than happy.

But I think what can paint an incomplete picture that individuals with Down syndrome are always happy is their ability to let things go. They don’t hold grudges. They don’t give two farts what anyone thinks. They live for the moment they are in, and if that moment makes them happy, then that is all there is. Nothing else matters. It is a beautiful thing, really. So yes, their joy is unique. It is captivating and inviting and wonderful. But remember – next time you’re prone to view Down syndrome as a condition that makes people extra happy, it is not their permanent state. After all, we are more alike than different.

Another lil PSA for ya.

There are some things you shouldn’t do but probably do anyway:

  1. Swimming right after you eat.
  2. Leaving the toilet paper roll empty after using it up.
  3. Keeping the water running while you brush your teeth.
  4. Coughing without covering your mouth.
  5. Referring to someone with Down syndrome as having “Downs”

People say “Downs” a lot — “oh yeah, they have Downs,” “what a cute Downs baby!” “do you think he’s Downs?” I know most of these people don’t mean anything bad by it. It’s simpler. It’s shorter. It removes the seriousness associated with “syndrome.” I have close friends and co-workers, who know and love my brother, who use this shortened terminology often. And while I internally cringe, I usually don’t speak up. I mean, it could be worse.

But I think it’s time it is said; for all of our sakes. Because I know it bothers more than me, and it has for a while.

Way back when, Dr. John Langdon Down classified the genetic condition we now know to be Down syndrome. It was named after him, and you’ll notice there is no ‘s’ at the end of his last name. This is why referring to Trisomy 21 as Down’s syndrome is incorrect.

And because Down’s syndrome is incorrect, so is “Downs.”

But not only is this terminology incorrect, it is also offensive. Hear me out, because I know the word “offensive” elicits many an eye roll these days. Referring to someone as “Downs” or “having Downs” is denying that individual their identity as a person first. “Downs” is an adjective, and as many of us can recall from our days in school, an adjective describes. It tells you what a person or thing is – funny, sweet, hairy, purple, joyful, girl. A person with Down syndrome is not “Downs.” Down syndrome inherently, so long as we say “a person with…,” places the person in front of their diagnosis. Because of this, Down syndrome is a noun – something a person has, among many other qualities.

When you use the word “Downs,” not only are you first defining an individual by their disability, but you are also making light of a genetic condition.

Indeed, there is nothing remotely negative or morose about receiving a Trisomy 21 diagnosis; however, individuals gifted with Down syndrome deserve to be spoken of in the highest regard. And to honor them best, we need to use the full diagnosis assigned them and nothing less.

If you aren’t sold on my point yet, consider hearing someone call a person with Autism, ’tistic.’ You may have shuddered at the thought of hearing this in real life, because chances are (hopefully!), you have never heard anyone say this before and you certainly wouldn’t dream of saying it yourself. In the same way, shortening Down syndrome to its unfortunately commonplace and more casual descriptor, “Downs,” is not doing justice to the individuals who are on the receiving end.

Even if your intent is noble, and even though it requires an additional two syllables, please use the correct term in its entirety – Down syndrome.

When you know better, you do better. And now you know.

On behalf of people with Down syndrome and those who love them, thank you.

 

 

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